Tuesday, March 8, 2011

Eby Girls Health Updates

I clearly haven't decided exactly what I want my blog to be. It started as a way to share the happy, the funny, and the exciting moments in my life with others. It helped me to focus on these things and find the joy each day. But I find that it helps me also to have an outlet for the sad and the difficult moments of my life. Especially with Matt working long hours, I find myself with quiet evenings and sometimes overwhelming emotions, and this is where it spills out. Many of you reading say that you are glad I am honest and open and that it encourages you too. So I will continue to be open.

Some of you have asked for more information on Naomi's joint pain, so here is the synopsis of that journey. Naomi's been having joint pain since last summer. When we found out she had celiac disease in the fall we were hopeful that a gluten (wheat) free diet would help the joint pain, but it has only gotten worse. Celiac disease is an autoimmune disease, meaning the body attacks itself. With celiac the attack is triggered by gluten (or wheat) in the diet, but when your immune system goes haywire you are also more likely to have other autoimmune diseases where your body attacks itself for other reasons. About 10% of kids with Celiac also have juvenile rheumatoid arthritis, a lifelong and debilitating disease of joint pain. I am afraid that that is what we might be dealing with with Naomi. Her joints have become more and more painful and stiff lately.

Yesterday she had trouble going up and down stairs or even walking when she woke up. The stiffness and pain improve as she gets her joints moving, but she is never pain free. Today she had trouble completing her school work because her wrist hurt so badly. I made her a pain rating scale with little sad faces so she could communicate her pain level to me today, and she rated her wrist pain at a 4 out of 10, with 10 being the worst pain imaginable. Tonight as I tucked her in bed she said the pain in her ankles was a 7 or 8 (with little tears in her eyes).

Typically Ibuprofen is given to help control inflamation, but with Naomi's kidney disease she is not allowed to take Ibuprofen. There are some heavy-duty immune-system-altering meds that may help, but they have some heavy-duty side-effects too. We are now waiting to get an appointment with a specialist in joint pain (rheumatologist) to see if we can get a concrete diagnosis and some help for Naomi.

Add on top of this scenario that Naomi and Emma had brain MRIs last Wednesday to see if they had signs of a certain syndrome that can sometimes accompany their kidney/liver disease and would have explained their speech and motor-skill difficulties. The MRIs didn't show signs of that syndrome, but turned up other worrisome findings. Emma's shows areas of her brain that do not have the myelin coating they should have by her age. I guess this is often observed in kids with developmental delay, but I'm not sure if it's a myelination disorder that causes delay or just that developmental delays are reflected in delayed myelination. Which causes which? We are supposed to follow up this finding with a visit to a neurologist, so I suppose I can ask him or her then.

Naomi's MRI showed a possible cyst in the pineal gland--a gland located in the very center of the brain that is responsible for making certain hormones. Pineal gland cysts are fairly common in adults but not in children. She will need to follow up with a neurosurgeon who will probably want a follow-up MRI, and if the cyst grows we may be facing deep brain surgery (something like a 1 in 4 chance from what I see on the Internet, but who knows how reliable that is?) All of this equals three more specialist appointments at the children's hospital which is a six-hour round-trip drive every time we go.

I feel a strange combination of worry and numbness, I think. After awhile trips to pediatric specialists become commonplace. Sometimes the worries turn out to be for nothing, and sometimes scary diseases actually lie beneath them, but strangely enough, both scenarios have almost become normal. This is our daily life, and I wonder how many people are tired of hearing about it or must think I am a hypochondriac on behalf of my children by now. I feel like I need to post a video of Naomi struggling to come down the stairs in the morning along with an explanation of how she is not prone to exaggeration and melodrama lest people think I make this stuff up to get attention.

But I don't make it up. Strangely, God has chosen to fill our lives with one medical challenge after another, and one comfort I have as I walk this wild, winding path is sharing it with others. So thank you for taking the time to read this, and to encourage my heart, and to pray for my kids, it is a blessing to me.

4 comments:

You are never, never, never out of line for being a mom who cares about her kids. There will be plenty of time for biting your tongue, being a people pleaser, etc, etc, but having kids who know that their mommy listens to them, believes in them, and is going to do everything she can to care for them (including venting to the cyber world so she can get up and face it all with a smile again tomorrow) is the most important thing.

You're all in our prayers and if I have to threaten to get really, really mean if you DON'T vent and keep us updated, I'll go there--don't think I won't! ;)

Please pass our thanks to Bible Presbyterian for their prayers. Naomi continues to have joint pain off and on each day. It is hard to be patient for the help she needs. She will be thrilled to receive a card! We love you all too, tell all who know us there that we say "Hi" and we send a big hug!

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About Me

About My Children

Naomi is twelve years old and is living with Bardet-Biedl Syndrome, a rare genetic disorder that can cause kidney failure, obesity, retinal degeneration, and various other symptoms. She also lives with Celiac Disease and multiple dietary sensitivities. Hannah is ten and lives with Celiac Disease and food allergies. Emma is eight and lives with BBS like her big sister Naomi. For Emma, BBS has also caused severe speech apraxia. Toby is seven and lives with one functional kidney. Elijah is four and is completely healthy. They are active, whimsical, and too funny to keep to myself.